Thursday, January 27, 2011

On This Day

On the night you were born, the moon smiled with such wonder and the stars peeked in to see you and the night wind whispered, "Life will never be the same."

Because there had never been anyone like you ever in the world.

So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name.

It sailed through the farmland high on the breeze...over the ocean and through the trees...

Until everyone heard it and everyone knew of the one and only ever you.
-Nancy Tillman-

Six months....One hundred eighty four days.... Four thousand four hundred sixteen hours.....just yesterday....a lifetime ago....

On July 27th 2010 my son Austin Bradley Harrison came bursting into this world. I plan to always remember it as the first time he proved someone wrong. The doctors had decided he wasn't ready to be born. Austin had different ideas.....Those moments are a blur in my mind, a collage of sound and pain. People screaming.People running. Someone saying...“Don’t push.” “I have to.” “The Doctor's not here” “I can’t wait.”  My boy made his grand entrance on a gurney. And as I pushed his slippery body into the arms of the closest nurse my world stopped.
They gently placed him on my stomach and my heart sank. There was something wrong.  He was almost silent while they cleaned him. There were no tears or protests. And over a room just moments before filled with chaos, an unnatural hush had fallen. And the silence hurt. I screamed “why isn’t he crying', and no one said a word. No one said a word as my in-laws rushed into the room moments after he was born. No one said a word as I withdrew from my son and told myself I was just tired. No one said a word. But I knew. I looked into my son's dark almond eyes and I knew. Everyday for the last nine months I had been waiting to hold this life in my arms, but somehow now I couldn’t bear it. So I spent the night on Auto Pilot and waited for someone to tell me I was wrong. Morning came and with it our pediatrician. I remember a nurse came with her and stood by the door. There was no turning back; my life was spinning out of control. I heard my Doctors wavering voice and couldn't focus, I only heard Trisomy 21. Trisomy 21. Down Syndrome. My baby had Down Syndrome. My brain shrieks, “There must be some mistake.” The Doctor left us. My heart was breaking, and we just sat. My husband and I sat not saying a word. The unknown is frightening, and we were plunging head first into the abyss. After all what did we know? Our experience was limited to a teenager who occasionally sat a few pews in front of us at church. I was so sorry for him and his family. After all Down Syndrome is horrible. Isn’t it?
Soon we were home. Still I was numb.... I think I smiled. I think I spoke. I think I prayed. But I don't remember. I know I mourned. I watched life happen around me. Others were here to carry on when I could not, as we waited for a blood test to prove what I already knew. And they came. And they were positive. And I cried. I cried such horrible gut wrenching tears that I thought my eyes might swell shut. I cried on the floor in my room while my Husband held my son and his Nana held us all and his Granddaddy struggled for words to help us. "Children, at least you got to bring your baby home." And he was right. Over the next few days I watched my other children with their new brother. They didn't notice he was different. Their love was untainted by stigma and stereotype. I watched them and I was ashamed. I examined myself and came up lacking. My babies, my most beautiful precious possessions made me open my eyes and see my son. My son. Not his diagnoses. And I fell in love. I spent hours examining him, searching for the thing that made him different from you and me. I will tell you what I saw. The cutest chubby little hands, with one line straight across his palm. My palm has two lines. A flat profile with an adorable little button nose. My nose is by no means small and cute. And his eyes, his amazing little almond shaped eyes. They're not like yours or mine. When Austin looks at you with those eyes it's like he can see your soul.
The heartache and the anger I felt in those first few weeks is but a distant memory, like faded writing on the yellowed page of a weathered book time erases all. But occasionally I pull out this "book," and reverently stroke it's tear stained pages and pay homage to those precious moments. Because as much as I gave birth to Austin, he gave birth to me. 
My baby has Down Syndrome. I can say that today and feel almost nothing.  Just like I might say my baby was born with Diabetes. It's scary at first yes. It effects our lives in a big way yes, but does it define my son? The answer is no. My boy can do anything. There may be days when he has to try harder, but I will be there fully present ready to help him every step of the way, and he will continue to prove people wrong. My son and others like him are ambassadors to this generation. They are here to shatter stereotypes. It's happening now. They are small business owners, and artists, ballet dancers, and chefs, and yes even college graduates. They have social lives, and passion, and they fall in love. See them. They have the weight of the world on their shoulders as they struggle to overcome cruelty, ignorance, and prejudice. Help them. Reexamine what you think you know about Down Syndrome. I did. We all fear what we don’t know. So help educate. Pass the word. Change the world.


Sunday, January 23, 2011

A Grown Up Playdate

Let me start by saying I love my children. Though anyone who reads my blog should be able to tell that I live and breathe them, what I'm about to say might be best interpreted after reading the above statement.

I love my children, and I love being Mommy, but occasionally I need to be something else. I need to be wife. I need to be Julia, and sometimes I need to be reminded.

In November my hubby and I were scheduled to head out to Vegas for a three day two night mini vacation. I was excited. We've always taken a trip in the fall, usually for a whole week, but the night before my excitement turned to anxiety. It seems as though since we had Austin I've held my breath. Waiting for the proverbial other foot to drop. Would something happen well we were away? So a mere eight hours before our departure, my amazingly understanding husband canceled our flight and our room at the Bilagio without a single protest. I've spent lots of time since then feeling guilty. I know that this man has struggled to. He received the same news as I. His veiw of perfection has been changed just like mine. He needs me now more than ever as his partner, not just the mother of his babies.

And so we had a date. A beautiful birthday date. Just far enough from home to make it exciting and just close enough to keep me at ease.
And I'm reminded of how important this is. The romance and closeness, and the good feeling that you get when you work at something, because all good things are worth working for. Even if working means leaving the centers of your universe at home.

So this is me... today not posting as Mommy of Alli, Aidann, Analeigh, and Austin....

But as Julia, wife to Ken.

Happy Birthday baby.

Here's to another 32 together.

Tuesday, January 18, 2011

Le Petit Posts...AKA I Have So Many Ideas and Not Enough Time Post

Sometimes I think back to the time before I had babies...I remember vaguely that I thought I had a pretty busy life. I think that if I had my very own Delorian I'd travel back in time and say to myself, "Self take more naps, oh, and also if you think about it, buy stock in hair dye cause you'll be needing alot of it." Sadly, I'm no Marty Mcfly and Doc Brown for some reason doesn't ever visit Florida, so I guess my younger childless self will have to learn all on her own. (I promise I'm going somewhere with this guys....bare with me.)Now present me knows that there really is no way to turn back the clock, but I can't help but fantasize about having just a little more time in the day. Just a tiny bit. A little smidgen. And you know what I'd do with it?

I'd write.

I'd sit at this computer and I'd write. My hands would fly over keys, as my tapping fingers made music, line after melodic line, and my words would be like a vessel to all of my emotions. I would write so that the world could see from my chair. So that they could feel what I feel and hear what I hear. I'd write our life. All of it; because even the tiniest most insignificant little thing is important.

If father time should grant me a whim, I'd make the post "From the Mouth of Babes." I would tell you about August,

and how he stole my heart from the moment that I saw him sitting on the floor of his living room, and that I think I was always meant to know him. I'd tell you how he and his big brother Gray battle low muscle tone and how that same condition is the cause of most physical and speech delays among people with Down Syndrome, and that those two boys have helped inspired me to suck it up through many a therapy session. I'd tell you how I love to talk to his Mommy so she can fill me in on all the Auggie cuteness, the newest being, "Whatcha singing Auggie?"......"My favorite song"...."Nationwide is on your side." And I'd throw in the story of our homecoming from a Mommy/Daddy trip to Jamaica. Where it was apparently jelly fish spawning season, and how as I regaled the story of my heroic evasion of the swarm a four year old Aidann looked up at me so solemnly and said, "Mommy what flavor jellyfish were they? Strawberry or Grape?

If the hands of my clock would turn a bit slowly. I'd write a post about advocacy and this blogs part in my role as a Down Syndrome Advocate. I'd tell you something I shared with another mommy when her role in our community was questioned. We parents are like rivers. Some of us rage and claw at the earth, forcing it to yield or be swallowed up in our path. Others are like a mountain stream, steady and resilient, ever patient as it slowly changes it's course. We may travel at different paces, but we all make changes to the land. I've not yet decided what type of water I am. I'm inclined to feel pretty comfortable as the stream, making change by simply rolling along, but occasionally a great storm will come, and when it does I rage. I rage and I claw and I advocate so fiercely that every word trembles with power and determination, because I want to move mountains, and I want it done today. But then there is this...
 and this....
and this little man, he advocates just by being.

Tonight as my husband comes out to kiss me good night, I'm torn between the heaviness of my eyes, and the conclusion of this post. I want to share how Alli started dance, and how those long limbs lend themselves so gracefully to ballet, when it seems like just yesterday those same limbs were curled inside me. The girl that made me a women is growing up. Occasionally I wish for an exorcist, but for the most part I'm excited to see the big girl she's becoming. My Aidann he's growing up to, and if there are any Granddaddies reading this post, we've got Pinewood Derby coming up, and my boy and his daddy might be going a little overboard on their entry. They may be in need of a little guidance. And Analeigh, sweet Analeigh Rose, she went to timeout today in school. She served her time, quietly got up, walked over and hit her teacher. Then without another word stomped over to the timeout chair and climbed back up. Yes dear readers. She's two.

And with that I'm done. My husbands warm arm and a snugly baby boy awaits. Sweet Dreams.

Thursday, January 13, 2011

My Rain

  This week started with rain. The kind that brings with it a dark maelstrom of swirling clouds, where howling winds send even the most stalwart of travelers scurrying for safety, as rain falls like sheets of glass across the horizon. It was the kind of storm that you know is on its way, but as you watch it roll in you're surprised by the savagery of it all. The way it beats at your walls like a hungry wolf, let me in, let me in, and you huddle inside with all that you love held near, praying that your shelter holds. This week that started with rain finds me with a stormy soul, and even though I had time to prepare, I am surprised by the savage way that my emotions are beating at my heart, and words are failing me.

I am tired. I am overwhelmed. I am angry.

  On Monday I got the news that someone that I love very much needs a new kidney. She was told to fill out her paperwork right away. Her need is very great, and though she has a willing donor in me she chooses to try other altnernatives. She chooses to turn me away because though it will lengthen her life she worries it might limit mine. Still we laughed. It's what we do she and I. We laugh because if we don't laugh we will cry, and she never cries.
  Austin had tubes put in on Tuesday, this was done in hopes of reversing the acute hearing loss in his right ear, but we have always felt blessed that the hearing in his left ear was impeccable. As a nurse carried my littlest baby away from me I told myself, "you are lucky, so many mommies have to deal with so much worse." I thanked God when they brought him back to my crying but whole, with his new tubes in place and no less then twenty needle holes where various anestesioligist tried to insert an IV.
  We spent last night at a childrens clinic in Orlando, a pulmonologist is trying to gain some insight as to why Austin has coughed almost every day of his young life. As we drove down the turnpike to the city I had a quiet moment to reflect, and I prayed for answers. I want him free of the cough that rips through is tiny body, I want him to sleep the innocent sleep of a baby, undisturbed by spasms and spells and wheeze. But last night as I watched them hook this newest piece of me up to wire after wire something inside me broke.

  And my shelter is failing. And I'm trying to hold it together, because I know that this storm will pass. But it hurts. Oh how it hurts. I'm tired of being positive. I'm tired of saying oh this isn't so bad, when really I want to scream..... THIS ISNT FAIR!!! Why can't I fix my baby? Why can't I fix this women that I love? Why can't I fix my heart? And I want to scream at the hungry wolf howling at my door.....DAMN IT WOLF, GO AWAY, because I'm angry, and I want to fight, and there's no one to fight.
  So I cling to the ones I love. They are balm to my troubled spirit. Slowly I'm sure the suns rays will burn off the clouds. This deluge will be reduced to a distant memory. Leaving nothing behind but the crisp feeling that follows a storm. Like the world is reawakening with a clean new slate.

 I'm waiting for this to happen, but until it does here's to rainboots.

Thursday, January 6, 2011

Dear Downy,

In my last post I wrote about getting caught up on life. When I wrote it I felt nostalgic and passionate. As I sat at this desk and reviewed all those amazing moments last year brought my life I cried great tears of joy.
Today as I write my I'm crying a different kind of tear, because today I realized now that I'm caught up on life I need to get caught up on laundry.

Disclaimer for my In-Laws: I promise they're clean and will get
put away eventually. Hopefully before your next visit.  

I know what you're thinking. "How can someone that's such an incredible writer be such a horrible house keeper?"Okay so maybe you weren't thinking that but if you were here's the thing. I'm so in love with my babies and my husband that I can barely breathe when I'm away from them. The mantel of Mommy and Wife is one I wear very proudly, it's my life's work and my greatest talent. Erma Bombeck said "When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me." Someday when I stand before my maker, I hope I can look back on my life and say, "God you gave me talent, and I used it everyday, I gave it all to my family and I wouldn't have it any other way." And when I'm gone my children will think fondly of the days we shared together. Hopefully,with a little luck, the piles of unfolded laundry will fade from their memories, replaced instead with spur of the moment theme dinners, costumes, and goofy faced pictures snapped with camera phones.

Or maybe they'll remember our first annual Boys V Girls Gingerbread competition. The one that still doesn't have a winner because all of our visitors say "I'm not sure guys, they're both equally amazing" when they're dragged over to compare and judge as soon as they walk through our door. (Please feel free to end our feud by voting in the comments field. All results will be strictly confidential. Well at least to the kids, you can be sure I'll be gloating around Ken when you declare the girls the winner.)

In case you couldn't tell which is which the girls have the
snowy cottage on the left-the boys are the modern car condo on the right.
I'm not sure but that may be the Michelin Man standing guard.
So maybe I'm not so great about laundry. Who needs wrinkle free clothes anyway? I've got a great life doing what I do best and every busy mommy's secret weapon.....

 So if you read this please take my advice. Let your house get dirty once in a while. Kick your heels up and live a little. Loosen that tie and go dance with your wife, put down that parenting book and enjoy your kids. Let the laundry go and buy some wrinkle releaser. There is time for work tomorrow.

P.S. I was not paid by Downy to post about their wrinkle releaser, but if someone from Downy should read this we might be able to work something out. "Will post for free wrinkle releaser" hint hint......

Sunday, January 2, 2011


It has been nearly two weeks since I sat at my computer and typed. I have found that though writing about life brings me such joy, sometimes it's best to back away from the desk and just live. The holidays I think, are one of those times.

And so we did. We backed away from the desk and we got caught up in living, and I added a few moments to the "always remember file" I keep locked away in my brain. Like the way Analeigh says "Happy Kriffmis," and how this was the year that my almost grown but not quite Alli asked for an I-Pod and a American Girl Doll.  Like how we broke tradition and skipped Candle Light Service at Church this year, but there has never been a Silent Night so sweet as the one sung a cappella in front of our fire place. Then as we counted down the clock to greet the New Year I thought back on all those moments this year has given me.

This year gave me a first and a second grader.

This year gave me a two year old.
This year gave me crashing waves and laughter and memories that will last a lifetime.

 This year gave me perfection. Two girls and a boy and another on the way.
 This wonderful soul searing year gave me Austin, and for a time my world was shaken, and I knew my life would never be the same.
 This year gave me this moment. The moment that the man that holds my heart holds our son and nothing else matters.
This might be my favorite picture ever. It was taken right after the Doctor came.
This year changed me. Like clay on a potters wheel it stretched me and shaped me.

This year gave me perfection. Two girls and two boys. It's not glossy and neat, it's not glamorous or magazine worthy, it's not predictable, and because of that it is. It's life and it's real and it's mine and it's perfect for me.

This year gave me this blog. Thank you all so much for reading.